Re: Another Newbee

September 30, 2005

HI!

Welcome! My daughter Emerence is 2.5 and SGA with a lot of RSS

characteristics. Either way, the treatments are the same. You have

come to the right place - I'm sure our Canadian contingent will

respond shortly. I am from Massachusetts. Please consider joining

hte MAGIC foundation www.magicfoundation.org to get newsletters

etc. MAGIC has a conference every year in July in Chicago and top

specialists give lectures on treatments and the kids get together

too. They have scholarships if you qualify and it is so worth it.

I promise you, if you can do it, even if you have to have a yard

sale or do Tupperware catalog fundraiser (Jodie CAls you take take

over explaining this one - lots of new people and a great way to

fundraise for your trip!!!) it is the best thing you can ever do.

You can also order the 6 dvds for about $40 from the past

conventions and watche them - also very well worth it.

TAke care!

, mom to 5 and Emerence 31 months 10.1 k 80 cm

> Hello All,

>

> My name is Dawna, my husband and I have four children and Noah our

> youngest has just been diagnosed as RSS. We live in Thunder Bay,

> Ontario, Canada and I am interested in communicating with others

with

> boys the same age as Noah who is 3 by the way, others about growth

> hormones and insurance etc in Ontario (if there are any out there)

and

> just anyone in general. As it has only been a month since we

found out

> for sure (as sure as it gets I guess) that Noah is RSS, we are

just

> starting the process of gathering information etc. We are nervous

and

> stressed, but the more we talk with people the better it gets. We

have

> an appointment with an endocrinologist in Southern Ontario in a

couple

> of weeks.

> Thanks ... looking forward to chatting and emailling!

>

> Dawna

September 30, 2005

Hi Dawna

You will find on this group that we have people from all over the world,

Canada, Australia, England, geez some we haven't heard from in awhile were

Russian and I think we have a couple in Japan now. But mostly the people are

in the US.

However you have lucked out tonight and found me!! I'm in Toronto!! Yes we

are in the same province.

My son, Adam will be 13 years old next week but he was just over 2 when

people started to say something was wrong with him and around 3 when I first

heard RSS but we didn't get a " for sure " for several years. I also seem to

be the only parent of an RSS child on this list from Canada who has their

child on growth hormone (OHIP will not pay for it, but I am a teacher and I

have it paid for through my work drug plan).

There's one girl out in Alberta who is off to Edmonton next week to see if

her endo will say OK to growth hormone (alot of our Canadian RSS families

are out west but their doctors all seem to not even want to prescribe it).

Now I am in the process of helping this girl in Calgary go through the

motions and the fighting to get GH paid for (once her doc prescribes it). So

no need for you to worry about that, I have some contacts with drug

companies up here too that will provide the GH for free if you can not get

it covered. So rest your mind on that one, I will help you.

Where will you be going to see the endo? Are you coming down to Sick Kids?

Any chance it is Dr. Daneman you would be seeing (if you come down here)?

You'll have to let me know, that's our endo. I can help you figure out how

to get around that hospital etc as well.

Now for a comprehensive understanding of RSS you made the great first step

of finding this group. Did you see Magic foundation in your web search? It

is a foundation for all sorts of growth disorders and RSS is included. Each

July there is a convention in Chicago. I have driven down twice now over the

years and it has been the best thing for Adam to meet other kids " like him " .

That means when he met 8 year olds (this was when he was 8) they were HIS

size (instead of way taller) and he meet 6 year olds who were SMALLER than

him (instead of usually being BIGGER than him). The world went into

proportion for him, the way it should.

We also got a chance to see a Doctor (we call her Dr. H) who is based in New

York. Now, as you know, OHIP will not pay for us to see these doctors, but

this doctor is so fabulous she volunteers her time free of charge to provide

some insights and consults during the convention. She was the one who said

Adam definitely had RSS. The doctors up here had decided since it wasn't

anything else, that must be what it is.....but I wasn't 100% sure until Dr.

H. saw Adam and told me what she thought.

The convention also has a variety of speakers and topics of educational

content for us parents and great activities for the kids.

first thing you should do is go to www.magicfoundation.org and check it out.

It's 35.00 Canadian for us to join (I think, I am pretty sure it's 30.00 for

the US people and we are 35.00) but this gives you the membership, access to

an incredible library of research articles, access to the convention at

discounted prices, a quarterly newsletter and wonderful information in

general.

I don't want to overwhelm you right away, I just get so excited to find

fellow Canadians.

Please feel free to email me through this group or privately if you have any

questions and let me know if you are coming to Sick Kids for your appt.

Take care

Debby

Another Newbee

> Hello All,

>

> My name is Dawna, my husband and I have four children and Noah our

> youngest has just been diagnosed as RSS. We live in Thunder Bay,

> Ontario, Canada and I am interested in communicating with others with

> boys the same age as Noah who is 3 by the way, others about growth

> hormones and insurance etc in Ontario (if there are any out there) and

> just anyone in general. As it has only been a month since we found out

> for sure (as sure as it gets I guess) that Noah is RSS, we are just

> starting the process of gathering information etc. We are nervous and

> stressed, but the more we talk with people the better it gets. We have

> an appointment with an endocrinologist in Southern Ontario in a couple

> of weeks.

> Thanks ... looking forward to chatting and emailling!

>

> Dawna

>

September 30, 2005

Hi Debbie,

Thank you, thank you, thank you!!! I may need that help with the

insurance/drug companies ... my husband's company said right off the

bat that it isn't a covered drug but they have already sent us the

form for the endo to fill out for an exception ... we are keeping our

fingers crossed. We have also applied to the Trillium Foundation.

And all this before we have even had our appointment. We have had a

little bit of a roller coaster ride the last month ... with finding

out the information, thinking we know something and then finding out

something else etc etc. Noah is one of the few (from what I

understand) that the chromosome 7 showed uniparental disomy. He also

has many of the physical characteristics, but not all. He was 4 lbs,

15 ounces at birth and I was 38 weeks when I was induced. The

genetisist that we saw last year wanted the ped to do the test for

RSS but didn't really think he had it because alot of his traits are

alot like the rest of my kids .. big head, big forhead, small chin.

It took almost a year between the apts, doing the bloodwork and

finally getting the results. The tests were done in North York.

Our endo is in London at the Children's hospital there. I picked

London as that is where my family is.

I joined Magic last week and received the package in the mail and

then we became members this week. Katy sent me the list of articles

and I called today to have some mailed to me. I want to take the

most information I can to the endocrinoligist.

Thank you again Debby and I look forward to much more communication!

Dawna

Mom to Matt 12, 10, Kaitlyn 8 and Noah 3 RSS

> Hi Dawna

> You will find on this group that we have people from all over the

world,

> Canada, Australia, England, geez some we haven't heard from in

awhile were

> Russian and I think we have a couple in Japan now. But mostly the

people are

> in the US.

>

> However you have lucked out tonight and found me!! I'm in Toronto!!

Yes we

> are in the same province.

>

> My son, Adam will be 13 years old next week but he was just over 2

when

> people started to say something was wrong with him and around 3

when I first

> heard RSS but we didn't get a " for sure " for several years. I also

seem to

> be the only parent of an RSS child on this list from Canada who has

their

> child on growth hormone (OHIP will not pay for it, but I am a

teacher and I

> have it paid for through my work drug plan).

> There's one girl out in Alberta who is off to Edmonton next week to

see if

> her endo will say OK to growth hormone (alot of our Canadian RSS

families

> are out west but their doctors all seem to not even want to

prescribe it).

>

> Now I am in the process of helping this girl in Calgary go through

the

> motions and the fighting to get GH paid for (once her doc

prescribes it). So

> no need for you to worry about that, I have some contacts with drug

> companies up here too that will provide the GH for free if you can

not get

> it covered. So rest your mind on that one, I will help you.

>

> Where will you be going to see the endo? Are you coming down to

Sick Kids?

> Any chance it is Dr. Daneman you would be seeing (if you come down

here)?

> You'll have to let me know, that's our endo. I can help you figure

out how

> to get around that hospital etc as well.

>

> Now for a comprehensive understanding of RSS you made the great

first step

> of finding this group. Did you see Magic foundation in your web

search? It

> is a foundation for all sorts of growth disorders and RSS is

included. Each

> July there is a convention in Chicago. I have driven down twice now

over the

> years and it has been the best thing for Adam to meet other

kids " like him " .

> That means when he met 8 year olds (this was when he was 8) they

were HIS

> size (instead of way taller) and he meet 6 year olds who were

SMALLER than

> him (instead of usually being BIGGER than him). The world went into

> proportion for him, the way it should.

> We also got a chance to see a Doctor (we call her Dr. H) who is

based in New

> York. Now, as you know, OHIP will not pay for us to see these

doctors, but

> this doctor is so fabulous she volunteers her time free of charge

to provide

> some insights and consults during the convention. She was the one

who said

> Adam definitely had RSS. The doctors up here had decided since it

wasn't

> anything else, that must be what it is.....but I wasn't 100% sure

until Dr.

> H. saw Adam and told me what she thought.

> The convention also has a variety of speakers and topics of

educational

> content for us parents and great activities for the kids.

>

> first thing you should do is go to www.magicfoundation.org and

check it out.

> It's 35.00 Canadian for us to join (I think, I am pretty sure it's

30.00 for

> the US people and we are 35.00) but this gives you the membership,

access to

> an incredible library of research articles, access to the

convention at

> discounted prices, a quarterly newsletter and wonderful information

in

> general.

>

> I don't want to overwhelm you right away, I just get so excited to

find

> fellow Canadians.

>

> Please feel free to email me through this group or privately if you

have any

> questions and let me know if you are coming to Sick Kids for your

appt.

>

> Take care

>

> Debby

>

> Another Newbee

>

> > Hello All,

> >

> > My name is Dawna, my husband and I have four children and Noah our

> > youngest has just been diagnosed as RSS. We live in Thunder Bay,

> > Ontario, Canada and I am interested in communicating with others

with

> > boys the same age as Noah who is 3 by the way, others about growth

> > hormones and insurance etc in Ontario (if there are any out

there) and

> > just anyone in general. As it has only been a month since we

found out

> > for sure (as sure as it gets I guess) that Noah is RSS, we are

just

> > starting the process of gathering information etc. We are

nervous and

> > stressed, but the more we talk with people the better it gets.

We have

> > an appointment with an endocrinologist in Southern Ontario in a

couple

> > of weeks.

> > Thanks ... looking forward to chatting and emailling!

> >

> > Dawna

> >

September 30, 2005

Dawna

You sound so well organized! I was more or less in shock I think for a year

or more! Great for you to get so proactive so fast.

Adam didn't start GH until he was 8; ideally kids should start earlier but

it wasn't considered too late. He's 4'7 " right now with lots and lots of

grow time left. However, 4'7 " was his maximum height I was guaranteed

without growth hormone. I look at him now and I think " he would have been

miserable as an adult. He wouldn't have been able to do alot of things at

that height " . We have been guaranteed for sure 5 feet now and possibly more.

London? I was wondering about London........McMaster's right? You are a long

way away from home being in Thunder Bay. I went camping in Northern Ontario

for my honeymoon and I remember clearly stopping in Thunder Bay at a store

and commenting to the fella in the store " it sure is hot eh? " (it was July

1988) and he said to me " oh you should have been here last week, we had some

snow!! " LOL

My insurance company, as well, told me that they would not cover the GH.

Just to shock you a bit, it's 1600.00 for 6 vials. Adam use to go through

one vial every 6 days when he was 8; now he goes through one vial in 3 days

so that means we spend 1600.00 every 18 days!!!! No way in the world I could

pay for that myself.

Now my endo applied to Eli Lilly for their compassionate assistance program.

I was given GH for free under the program AND they had a worker assigned to

me to help me appeal my insurance denial. And we did it, we got it covered.

I just had a good scare two weeks ago where my insurance said I had to go

through the application process all over again and said they would suspend

coverage until that time (ended up being a computer glitch as I found out a

week later!) but it was terribly upsetting for me. The good news was that I

contacted Eli Lilly and they said they would get me on that program again

and I would have more GH in 2 days. So as I said, when you get to that

point, let me know, and I will give you the name and number of the girl I

spoke to. It's a 1-800 number so it's toll free but this girl was awesome!!

I'm not familiar with the Trillium foundation. What's that? I am trying to

get Adam into a program that might be beneficial to his self esteem but I am

trying to discover some foundations that might subsidize it. I am in the

beginning stages of this (I just decided to start looking into this on

Sunday). Our school social worker is going to help me, but you'll have to

tell me what the Trillium foundation is all about.

Adam didn't come back positive for the chromosome thing. Are you sure it was

in North York that they did the test? I heard that even the people who's

blood was being taken in the states were having it sent to Sick Kids because

that was the only facility to do it. I know Adam and I were part of the

research, it was a doctor at sick kids who isolated that chromosome #7 for

RSS and we were part of that discovering of it. But I'm sure you know only

10% of RSS kids have that.

Adam as well inherited almost all of his RSS traits. His father, myself and

his older sister, we all have head sizes in the 90th percentile, so Adam's

large head wasn't considered abnormal. Adam's father has an underdeveloped

chin (hence is long lasting beard!) and I have a small crowded jaw (as do

RSS kids). My mother and my daughter (who is 16 years old now, and about

5'10---not RSS for sure) have the curved pinkie and yet Adam does not!!

It's very bizarre.

Please feel free to write anytime!! That's what I am here for!

Take care

Debby

Another Newbee

>>

>> > Hello All,

>> >

>> > My name is Dawna, my husband and I have four children and Noah our

>> > youngest has just been diagnosed as RSS. We live in Thunder Bay,

>> > Ontario, Canada and I am interested in communicating with others

> with

>> > boys the same age as Noah who is 3 by the way, others about growth

>> > hormones and insurance etc in Ontario (if there are any out

> there) and

>> > just anyone in general. As it has only been a month since we

> found out

>> > for sure (as sure as it gets I guess) that Noah is RSS, we are

> just

>> > starting the process of gathering information etc. We are

> nervous and

>> > stressed, but the more we talk with people the better it gets.

> We have

>> > an appointment with an endocrinologist in Southern Ontario in a

> couple

>> > of weeks.

>> > Thanks ... looking forward to chatting and emailling!

>> >

>> > Dawna

>> >

September 30, 2005

Hi Dawna, Welcome aboard. You came to the right spot.I Live in North Dakota but

no boys. I have a darling grandaughter with RSS. She is my pride and joy. As you

will find out all our children are very special to all of us. You could say it

is one big happy family. So welcome Home

Sheldon(G-Pa to my little angel Laikyn from North Dakota)

Another Newbee

Hello All,

My name is Dawna, my husband and I have four children and Noah our

youngest has just been diagnosed as RSS. We live in Thunder Bay,

Ontario, Canada and I am interested in communicating with others with

boys the same age as Noah who is 3 by the way, others about growth

hormones and insurance etc in Ontario (if there are any out there) and

just anyone in general. As it has only been a month since we found out

for sure (as sure as it gets I guess) that Noah is RSS, we are just

starting the process of gathering information etc. We are nervous and

stressed, but the more we talk with people the better it gets. We have

an appointment with an endocrinologist in Southern Ontario in a couple

of weeks.

Thanks ... looking forward to chatting and emailling!

Dawna

October 1, 2005

Dawna,

I LOVE the name Noah!!! If we had had another baby and it was a boy,

that would have been his name. Our Max, however, broke the mold and

there were no other little Zwains to follow. I didn't have the energy!

I know your Noah is much younger than Max (he's 17) and you want to

connect with parents of kids of similar age, but I have LOTS of

experience and am willing to share just about anything. Well, it

seems like Max has had just about everything! (sigh) But he's a

great kid, the people on this listserve are wonderful, and, as Sheldon

so beautifully said, " Welcome home! "

Jodi Z

October 1, 2005

hi dawna!!

welcome to this great big " family " of support!! have you checked out

the magic foundations web site www.magicfoundation .org they are a

non-profit org for families of children and adults with growth

disorders!! also there are several families here from canada!! leah

for one will be back in a few days, she is also going to the endo to

find out about getting olivia on ght so she will be able to give you

some insight!! my son is 4 1/2 and is 30lbs 38 1/2 " and on ght.

jodie c

October 1, 2005

Thank you everyone for all the welcoming!

I do want to connect with people that have kids Noah's age to compare

etc (it's just nice to talk to people whose 3 year old looks and talks

like a one year old)... but the knowledge from everyone is most

definitely welcome and sooooo important. And of course at one point

your child was 3.

I think that so far we have been very lucky with Noah ... he hasn't

been in the hospital, no feeding tubes. But I am getting concerned

about Hypoglycimia (sp)and that he just doesn't eat what he should.

Thanks everyone and I look forward to more.

Dawna

Matt 12, 10, Kaitlyn 8 and Noah 3 RSS

> Dawna,

>

> I LOVE the name Noah!!! If we had had another baby and it was a boy,

> that would have been his name. Our Max, however, broke the mold and

> there were no other little Zwains to follow. I didn't have the

energy!

>

> I know your Noah is much younger than Max (he's 17) and you want to

> connect with parents of kids of similar age, but I have LOTS of

> experience and am willing to share just about anything. Well, it

> seems like Max has had just about everything! (sigh) But he's a

> great kid, the people on this listserve are wonderful, and, as

Sheldon

> so beautifully said, " Welcome home! "

>

> Jodi Z

October 1, 2005

Dawna,

Welcome to the group and I am so glad to see that you have already

found MAGIC and asked for more information. That is wonderful and

you will also learn and experience a lot just form reading and

posting on here. Try not to stress too much about RSS. It can be

challenging at times, but the great thing is our kids are wonderful

and very spirited children who are pretty sharp, too! )

Take care and keep posting,

Jodi R.

's mommy, 3, RSS

> Hello All,

>

> My name is Dawna, my husband and I have four children and Noah our

> youngest has just been diagnosed as RSS. We live in Thunder Bay,

> Ontario, Canada and I am interested in communicating with others

with

> boys the same age as Noah who is 3 by the way, others about growth

> hormones and insurance etc in Ontario (if there are any out there)

and

> just anyone in general. As it has only been a month since we found

out

> for sure (as sure as it gets I guess) that Noah is RSS, we are just

> starting the process of gathering information etc. We are nervous

and

> stressed, but the more we talk with people the better it gets. We

have

> an appointment with an endocrinologist in Southern Ontario in a

couple

> of weeks.

> Thanks ... looking forward to chatting and emailling!

>

> Dawna

October 1, 2005

> Hello All,

>

> My name is Dawna, my husband and I have four children and Noah our

> youngest has just been diagnosed as RSS. We live in Thunder Bay,

> Ontario, Canada and I am interested in communicating with others

with

> boys the same age as Noah who is 3 by the way, others about growth

> hormones and insurance etc in Ontario (if there are any out there)

and

> just anyone in general. As it has only been a month since we found

out

> for sure (as sure as it gets I guess) that Noah is RSS, we are just

> starting the process of gathering information etc. We are nervous

and

> stressed, but the more we talk with people the better it gets. We

have

> an appointment with an endocrinologist in Southern Ontario in a

couple

> of weeks.

> Thanks ... looking forward to chatting and emailling!

>

> Dawna

Hey Dawna,

My son Josiah was 2 in May/2005 so he is just over 28 months, he was

just diagnosed with RSS in July so we are really new at this whole

thing too, but it is amazing how quickly you learn and how you just go

with it and do what your child needs. We live in Grimsby Ontario

which is near Hamilton so we go to Mc Master Children's hospital.

We

haven't seen the endo since Josiah was first diagnosed while in

hospital, we go in a few weeks and we are hoping he will put him on

Growth Hormones, we haven't figured out how that will work but he

assured us not to worry about it that he would help us figure that

out, we too are working on getting benefits to pay for it. Josiah got

an NG-Feeding tube in July/2005 when he was hospitalized (for three

weeks for failure to thrive). He is doing very well with it and has

gained 3 lbs since the end of July (he is now 23 lbs), we have decided

to go ahead with a

G-Tube as he has done so well with growing. I am really thankful that

we got to try the NG tube first so that we could see how beneficial it

was for him before deciding on a permanent one. It has been really

hard to put him through this but I know one day he will be thankful

that we did all we could to help him thrive and grow. Please keep in

touch and feel free to email me directly at p-h.robertson@...

take care,

R (mom to Josiah 28 months, RSS, NG tube)

October 1, 2005